For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Wednesday, 28 May 2014

Time Well Spent, and a Thought of Normal.

I had a fantastic time in Blackpool with Jace. Everything went as it should (admittedly it got a  little hairy at one point because of my chest but nebulisers, pred and my oxygen settled it, then pain killers to make me comfy so that I could rest. During this attack, as usual Jace handled and if things had gotten too out of hand, we knew what to do. It can be difficult to manage a long term problem when you're away from home, where the hospital staff know you and your specific case. Luckily it didn't come to it but I know I can be confident with Jace should the situation arise. It takes a special kind of person that can take on someone like me, so-called "damaged goods" and handle calmly and carefully some things that others would (and have in the past) run a mile from.

Before I could go anywhere though we had to arrange some oxygen cylinders for me to use. I'm on my oxygen typically for 16 hours a day at 2l so that was really important to be sure that once I'd arrived I'd have my supply. I carried a tank for getting there and back, something else I was wary about (having never travelled on a train with it) as I had concerns that they could have refused to let me on board. The good thing is that all the staff at Redditch, Birmingham New Street, Preston and Blackpool were all lovely and so helpful. They took good care of me and made sure I could travel in comfort. Travel has made me weary and I'll sleep well tonight.

We spent our time together happily talking, watching films, snuggling up and playing Yu-Gi-Oh (a very fun card game) and enjoying each other's company. I have only travelled to Blackpool a handful of times but the sea air does me some good, I'd move out there if I could but my specialist doctors are in the Midlands and so are all my friends and family. I'm grateful to my doctors because without them and their work, I wouldn't have been able to go. I'd probably have returned home and back to being sat, barely awake or aware of anything. I never realised how much things had changed, it was gradual. Not like I woke up one morning and said "you know what, I want some oxygen and all the meds I have." Going out takes planning. I have to meticulously plan everything, from route and transport to time and any possible delays or problems. I have to make sure that I have everything in place and that all my meds are where I need them.

I've always loved travelling on trains. Maybe it stems from a childhood of loving Thomas The Tank Engine and the fantasy of the trains on Sodor, almost stuck in a Victorian era, before electric trains took over. Occasionally you do come across a steam engine (one came through Preston earlier, I had to stop and watch) and it reminds me of the old books that my Nan used to read to us. I brought myself an omnibus of all of the original stories some years ago and whenever I feel a little down, I read these stories (along with the Beatrix Potter tales) and it does take me back to those old days. Days when the most I was worried about was where my favourite toys were or when I could watch a video.

One memory I have of childhood was on one of my videos, there was this graphic from a company called "The Video Collection" and it always used to make me jump and I was quite afraid of it, lulled out of hiding only by the old piano theme song of Thomas. I used to have a lot of appointments with the eye clinic. I was born with a squint, a kind of eye defect in which the muscles behind the eyes don't work properly. It subsided from the age of 7 until my early teens where it sank almost to the very corner, I had surgery on it at the age of 14, but it has come back a bit now in my adult years and my right eye still doesn't work properly. As a child, I just remember being off school for the appointment, having a strawberry fruit corner and watching my Thomas video.

I remember having my eye operation, well I remember going to the station with Mum and Nan (and for some reason I still have no idea of, my brother) and getting to the hospital. I sat on the ward until I was called. I felt nervous as I was laid down on a trolley, the next thing I remember was waking up, asking for my plush Tazmainan Devil and going back to sleep. I was really nauseous due to the change in my eye's position in my brain and we were in the process of moving house. I spent the last 2 days in the home I grew up in sleeping and standing in the bath to admire my "normal" eyes. I had to stay at my Nan's for a couple of weeks while I recovered, I'd been given some money by my Mum, I brought myself a lot of Crayola art products. I spent most of my time drawing. Not really much has changed! The one thing that stays on my mind is that feeling of "normal". I'd do anything to be well, not struggling and not having to rely on medical equipment in my day to day.

I still draw, pretty much all the time now. It gives me something to do because they never told me that a life on the sick means that you have time. Lots of it. Sometimes it feels like you have too much so it comes down to just filling the time with things I like. Be that drawing, writing, playing games or spending time with loved ones, because none of us know exactly how long we have, so its best to spend that time wisely.

Wendy xx

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